Circles

From the day we arrive on the planet

And blinking, step into the sun

There’s more to see than can ever be seen

More to do than can ever be done

There’s far too much to take in here

More to find than can ever be found

But the sun rolling high

Through the sapphire sky

Keeps great and small on the endless round

 

It’s the Circle of Life

And it moves us all

Through despair and hope

Through faith and love

Till we find our place

On the path unwinding

In the Circle

The Circle of Life

 

The Circle of Life (Elton John, Tim Rice)

 

 

I’ve lost track of which plan or what night we’re on but that’s actually a good thing.  We had a long conversation with our wonderful neurologist and decided to adjust the dose and timing of Nik’s Neurontin.  Apparently, he metabolizes the liquid formulation pretty quickly; by the time the first half-life has been reached, he begins to get actual withdrawal symptoms which may trigger partial seizures —or just look like it.   Um, yeah, about that…

 

We’re queuing up for a twenty-four hour EEG to rule out actual seizure activity.  Heck, why not?  It’s been a year since his last seizure —as far as we know.  We do know with a reasonable degree of certainty that the nocturnal pains and waking were not caused by seizure activity; he was having the “episodes” during his last EEG in March of 2008 —the one that showed no signs of actual seizure activity.

 

We also know this: since we tweaked Nik’s meds on Friday, Nik has been sleeping straight through the night with little sign of distress or discomfort.  (I hope I didn’t just jinx it by putting that in writing!)  I am getting closer to actually sleeping longer myself.  It’s amazing what a good night’s sleep can do for a body, isn’t it?

 

If I ever get caught up, I’ll let you know what it’s done for me.  Meanwhile, here’s what it’s done for Nik:

 

The day I posted the cute story about taking away Nik’s shoes to keep him from climbing the gate?  By 11:00 a.m. the same day, he figured out how to climb anyway.  That was Thursday.  I spent the rest of the afternoon trapped again. 

 

 

That night, we fortified the castle reinforced the gate.  My family room now looks like Baby Gitmo a really secure place for Nik to play.

 

 

 

Friday, Nik ate broccoli!  He just reached over and picked up a small floret from my plate.  Crunch!  He bit the little green fluffy bits right off.  He actually even swallowed it down with the help of some water!  I love that Nik will try any food at least once and enjoys fruits and vegetables! Whew!

 

Saturday, we went to Sesame Place for the Variety Club Day for Families with Autism.  It was our first time at Sesame Place so we weren’t sure what to expect —especially from Nik.  It was also our first outing as a Family with Autism and, again, we weren’t sure what to expect.  Both of those merit their own blog posts though I may not get to it for a while.  I can tell you that we met some really wonderful families, had a great time and can’t wait to go again.  To whet your appetite, here’s a glimpse of the day:

 

 

Saturday night, I learned that a very dear and special childhood friend passed away.  I’ve been riding a roller coaster of emotions; we were extremely close growing up though we’d lost touch when I left town many, many years ago.  He was like the brother I always wanted when we were kids.  We reconnected via Facebook recently; I was so excited at the prospect of seeing him over the summer and getting to meet his wife and daughters, having him meet Nik and Niksdad and reconnecting.  One of my greatest regrets is that I’ve waited so long to start to reconnect with old childhood friends.

 

Nik seems to sense that I’ve been sad.  I don’t think it’s a conscious knowing, more of a kind of symbiosis; he’s been gentle and loving with me, going so far as to actually want to snuggle in my lap before bed for the past two nights.  Maybe it’s the medication or maybe it’s symbiosis; I can’t know for certain, but it feels indescribably, achingly lovely. 

 

I can count on one hand the number of times in our life together that Nik has let me rock him to sleep in my arms —let alone upon his request.  Yet, Saturday night found us plastered together in the heat of his room, rocking in the darkness until he fell asleep.  I could smell the baby soft scent of sunscreen in his hair and taste the tang of sweat on his skin when I kissed his brow.  Pure heaven.

 

Both yesterday and today, Nik ate.  No, really —everything!  He.had.no.formula!  The only things that went through his feeding tube were water and his vitamin.  We’re working on getting him to increase his fluid intake by mouth; it’s slowly coming along.  Once we can get him drinking enough fluid by mouth we can start to think about getting rid of the feeding tube.  If you had told me less than a year ago that we would be in this place I wouldn’t have believed it.  I always knew we’d get here but I just assumed it would be in slower, smaller steps.

 

Today, he not only signed Mama several times with prompting, but he also signed it when I asked “What’s my name?”  It makes my heart sing.

 

Oh, and did I mention that he tried to change his own poopy diaper the other day?  Yeah, that was a fun time!   Or did I tell you how he’s trying to feed himself with a spoon now and signing to indicate “I’ll do it myself!” more often now?  Or how he’s helping to pick up his toys when I ask him to?  Seriously.

 

It just seems that Nik is making huge leaps forward in multiple areas lately.  Climbing gates, eating food, signing new words, using intentional communication with other people besides just me… it all seems so sudden.  Sometimes I actually wish it would slow down —just a teensy bit— so I can savor the moment at my own pace. 

 

Nik, clearly, has other plans.

 

Today’s accomplishment involved opening the  child-proofed door to the powder room and playing in the toilet and the sink —five minutes before we were supposed to go to his PT and OT sessions across town.  Niksdad has been busy installing new hardware and extra gates in between studying for his final exams!  Nik, like his daddy, is highly mechanically inclined.  I fear it is only a matter of time before he figures out how to work around all our carefully laid plans.

 

I can’t wait to see what our little MacGyver does next.

 

Yep, this is the thing that Nik figured out how to remove...in 7 seconds. (I timed it!)

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A little rough around the edges

 

Original art courtesy of le petit enfant blog

You know it’s never a good sign when the nurses at the pediatric hospital (a) know you and your child by both sight and name and (b) can tell when things aren’t good just by looking at you.  Yep, true story: one of the nurses actually commented to me the other day, “Mrs. Niksmom, you don’t look quite like your usual self.  Everything okay?  You’re usually, um, more, um polished.”  She stammered, embarrassed.  But she said it with such tender concern that I couldn’t possibly be offended.  Besides which, she’s right; it’s been a pretty rough go of things around here these past few months.

 “Oh, thanks T!” I laughed, “I thought I looked pretty good considering we haven’t slept through the night since about Christmas!”

Poor thing, her jaw dropped and her eyes went wide with surprise.  “Oh, well, you’re right then,” she smiled weakly, “you do look pretty good.  But still, not your usual self.”  I was touched by her concern.  She’s known us for a few years now and genuinely cares for Nik and our family.  We’re pretty lucky that way, I think.

 

 Things are still clear as mud around Nik’s ever increasing bouts of pain and wakefulness.  The allergy testing was all negative and the endocrinologist we saw this week was very up front in telling us he didn’t think the answer would be found in his realm of medicine —at least, not in the traditional sense.  Both doctors hinted quite broadly that we may have more luck exploring the area of food intolerance through elimination diet and the addition of some probiotic types of supports.  Actually, the allergist hinted, the endocrinologist flat out told us. 

 

We’ve decided to re-visit the whole issue of gluten and casein in Nik’s diet.  There does seem to have been a dramatic increase in the frequency and intensity of Nik’s episodic headache and pain activity since we’ve been letting him eat absolutely anything he wants.  Really, anything we offer him is more accurate.  Difficult to know for sure as the correlation doesn’t always equal direct cause and effect.  Still, here we are back to the GFCF diet and trying to find things Nik can or will eat with his textural challenges.  The learning curve is steep as Nik has decided to throw in a slight monkey wrench of not wanting to bite or chew anything again. (Insert heavy sigh here.)

 

Consequently, Nik’s getting more formula than we’d like.  That one change seems to be having a profound effect on his pain; it seems the more formula he gets, the worse the pain.  And the itching sensation is greatly intensified—at least it appears to be an itch; when it kicks in, Nik grabs at his cheeks, his eyebrows, his belly and his legs and pulls frantically at them —as if he could remove the offending or irritated part.  The challenge is that we don’t know what is causing the sensations so we don’t know how to eliminate the culprit.  His formula (which is a gluten-free prescription medical formula) does contain casein so we’re kind of stuck until we can find a replacement or until he decides to eat enough that we can wean him off the formula. 

 

We’ve added some enzymes to Nik’s diet which seem to minimize some of the gluten/casein effects but it’s not foolproof.  Nik can’t say for sure if he feels different after taking them; we can only judge by his behavior or lack of pain whether it’s an improvement.   

 

Meanwhile, we’ve been told by a few parents who have transitioned their children to GFCF diets —and seen marked improvements in sleep, gastric functioning and a lessening of self injurious behaviors —that there was a definite detox period of roughly ten to fourteen days in which the symptoms seemed to get worse before they got better.  Hearing that bit of information was a tremendous relief for me this week as we’ve seen a marked regression in some of Nik’s behaviors.  He’s gone back to some of the self-soothing things which he seemed to have outgrown —infant toys which light and play music, vibrational input in his mouth, mouthing absolutely everything (which he hasn’t done at all in months).  His perseverations, especially with doors, seem to be very prominent again in spite of all efforts to redirect his attention. 

 

Interesting to note though, Nik’s cognitive skills have not slipped one iota.  Yes, he’s very easily distracted —more so these past few days than ever before— but he’s still very engaged in his environment and willing to do his “work” in his PT and OT sessions.  Nik’s keenly interested in letters and numbers and figuring out how things work.  Even when it may look, to an outsider, like Nik is simply perseverating on the animals which go with his alphabet train station —repeatedly pressing the animal into the grooves to hear what it says, what color it is, what it likes to do —I can tell he is listening intently and taking in the information, storing it away for future reference. 

 

I have no idea where all of this will lead us.  We’re just taking it a step at a time —grateful for the good days, praying for the bad days and nights to become fewer and farther between, and so appreciative of all the support we receive from people around us —both in “real” life and our online extended family of friends.

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Give and Take

It’s been a seriously rough patch over here at Nik’s house — a very, very, very rough time here.  I don’t think that is understating things at all. 

 

We’ve been battling against the mysterious pains for so long now that they are starting to feel like a part of the family —kind of like bad in-laws that came to visit and ended up moving in.  Then we had the detour to the hospital for Nik’s ileus.  Now we’re trying to figure out whether his new found obsession with love of eating is compounding things with the possible advent of food allergies and maybe even celiac disease. 

 

We’ve gone from sleeping peacefully on most nights to not sleeping at all many most every night.  The bruises on Nik’s poor little face and legs (he kicks himself in the right shin with his left heel) are so bad that it makes me cry and makes my husband feel ill.  Just when one set starts to develop the soft blend of yellows, greens and purples, Nik gives himself some new ones to overlap in angry shades of blackish-purple.  They are all very distinct in size and shape; I can pretty much map out which knuckles hit where from the patterns on his face. 

 

Nik’s suddenly decided that going anywhere with his Daddy is only okay as long as I am there, too.  The mere idea of getting into the car without me sends rivers of tears coursing down Nik’s cheeks and he begins a plaintive chorus of “Ma-ma-ma-ma!” —complete with outstretched arms and clutching at my shirt when I lean in to kiss him goodbye.  My radar is pinging frantically as I try to figure out a possible cause for this new behavior.  His father and I know it is a communication but we are unable to figure out the underlying message so we simply muddle through.

 

It seems that just as things settle a bit and we feel a little easier —Bam! —the other shoe drops and we’re back in the fray.  I hesitate to write much these days because things change so quickly that I can’t keep up; I feel like I am writing fiction when I’m trying relate  all the good things that have just happened and Nik is in the midst of blackening his own eye as I write or we’ve had seven consecutive nights of no sleep.  I guess you could say I am experiencing a bit of cognitive dissonance in the process. 

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Somehow, even in the midst of the worst days, there are tiny glimmers of hope shining through.

 

Nik’s desire and ability to eat have absolutely skyrocketed!  We were finally able to get his blood allergy testing done last Saturday and began giving Nik Allegra to help minimize any symptoms.  [side note: It’s not having any apparent impact on the accompanying symptoms.]  Since then, we’ve pretty much let Nik eat whatever he wants; within the span of one week, Nik’s gone from eating a mere five percent by mouth to inhaling consuming more than fifty percent of his daily nutrition orally. FIFTY PERCENT!

 

It’s not just the increase in quantity either; that alone would make us very happy.  No, Nik has simply decided: it’s time and he knows how to eat.  With a fork and spoon.  Finger foods.  Textures.  He’s teaching and challenging himself as he goes; we have not tried some of these things with him before and yet he has mastered them.  It still boggles my mind.

 

One of the nice things about Niksdad losing his job recently is that he is now home on weekends and we have opportunities for some wonderful family time.  We had brunch at my parent’s house on Sunday.  Nik decided that would be a great day to show off his eating prowess for his grandparents. 

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 As I was setting up his booster seat —and apparently taking too long to suit him—Nik launched himself head first into one of the cushy arm chairs at the table (we were dining on my parents closed-in porch with their generously proportioned patio furniture).  Rather than try to wrangle him while I was fixing his booster, I simply handed him one of his cooked pancakes.  Really, I just assumed he would lick it and tear it into pieces that would end up either on the floor or the table to be cleaned up by the cat after we had gone.  You can imagine my surprise and utter delight when he tore off a piece and stuffed it directly into his mouth! 

 

I still get kind of choked up thinking about it; it’s been a long, hard journey to get here.

 

 I thought the “pancake incident” was the pinnacle; it was just the beginning.  During the course of the past few days —in spite of his horrible nocturnal (and now occasional day time) episodes of pain —Nik has surprised us by feeding himself without any assistance on more than one occasion.  It’s not perfect —and it’s certainly not neat —but the confidence he exhibits and the gusto with which he eats is nothing short of amazing.  And his palate seems to be limited only by the textures of the food; he’s actually managed to bite into a piece of dry cereal without prompting —or freaking out!

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Believe me when I say this odd juxtaposition of tremendous breakthroughs coupled with the debilitating pain is keeping us all more than a little off balance.  Just when I think I can’t take anymore, something happens to slow the pace a bit. Or, as was the case last weekend, something so wonderful happens that it helps restore some perspective and provides a boost of energy needed to keep going.

 

My wonderful friends —and I do consider them friends though we’ve not (yet) met face to face —sent me the most perfectly timed and thoughtful gift.  I still cry when I re-read the note.  With this amazing gift I have started to allow myself to think about doing things or having things I wouldn’t otherwise allow myself to.; I’ve gotten so good at sacrificing my needs for my family’s needs.  I don’t mean that in a martyred, feel-sorry-for me sort of way.  It’s just what happens when you are the full time caregiver for a child with as many challenges as Nik has had in his short life.  My friends, you totally get it and I love you for that.  I am so grateful for the words of love and support and for the desire you had to reach out and remind me that we’re all in this together.

 

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Amazing Avery

Courtesy of Alex Anderson Quilts

Thinking of our little friend, Avery, today.  He’s going through some heart surgery very far from his home.  His family —his parents and his two brothers — is with him but they could sure use some extra love and support.

Won’t you please stop by his mom’s web site and add your good wishes?  Thank you.

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